4 EUCERD Criteria for designation of CEs for RD in MS 1/2 1. Capacity to produce and adhere to good practice guidelines for diagnosis and care. 2. Quality management in place to assure quality of care, including National and European legal provisions, and participation in internal and external quality schemes when applicable. 3. Capacity to propose quality of care indicators in their area and implement outcome measures including patient satisfaction. 4. High level of expertise and experience documented, for instance, by the annual volume of referrals and second opinions, and through peer-reviewed publications, grants, positions, teaching and training activities. 5. Appropriate capacity to manage RD patients and provide expert advice. 6. Contribution to state-of-the-art research. 7. Capacity to participate in data collection for clinical research and public health purposes. 8. Capacity to participate in clinical trials, if applicable.

5 EUCERD Criteria for designation of CEs for RD in MS 2/2 9. Demonstration of a multi-disciplinary approach, when appropriate, integrating medical, paramedical, psychological and social needs (e.g. RD board). 10. Organisation of collaborations to assure the continuity of care between childhood, adolescence and adulthood, if relevant. 11. Organisation of collaborations to assure the continuity of care between all stages of the disease. 12. Links and collaboration with other CE at national, European and international level. 13.Links and collaboration with patient organisations where they exist. 14. Appropriate arrangements for referrals within individual Member States and from/to other EU countries if applicable. 15. Appropriate arrangements to improve the delivery of care and especially to shorten the time taken to reach a diagnosis. 16. Consideration of E-Health solutions (e.g. shared case management systems, expert systems for tele-expertise and shared repository of cases).

6 National Plan The Netherlands

7 Why patient involvement in accreditation? Nothing about us without us Patients can give feedback on their experience (care, research, communication) with the CEs Patients & care providers: same interests Start / intensify collaboration

12 Collaboration NFU and VSOP NFU = National Federation of UMCs Summer 2014: Common advocacy towards Ministry of Health Criteria from EUCERD + Steering Committee on RDs worked out SMARTly to help PO to weigh the criteria Interrelated on-line questionnaires for CE and PO Orphanet classification (CEs must upload documents to prove scientific excellence, standards of care, pathways, etc..) NFU: appointed coordinators for RDs in the 8 UMCs VSOP: several information / consultation meetings

13 Role VSOP Accreditation procedure: September September 2015 Search for matching PO Convincing PO to participate, also if CE was unknown to PO Helpline (telephone + ) for assistance in filling out the questionnaire and forming an opinion. Offering an on-line consultation among members PO Representation in Central Accreditation Committee Interim and final evaluation

15 VSOP questionnaire for patient organisations A. Specify the 5 most relevant criteria out of the 16 criteria that will be assessed B. Answer the SMART questions covering each of the 16 criteria, per cluster and per disease C. In conclusion, do you approve the designation of the CE? Why (not)? D. Main strong points? Main suggestions for improvement?

17 Criterion 1 Het expertisecentrum is in staat tot het leveren van hoog gespecialiseerde complexe patiëntenzorg op het gebied van diagnostiek, behandeling en nazorg en onderzoek. CE is able to provide highly specialised care regarding diagnostics, treatment and research. Number of patients in The Netherlands Number of patients that are a member of your PO Number of patients visiting the CE For first doctor s appointment For second opinion

18 Criterion 2 Het expertisecentrum levert, waar nodig, de zorg met een vaststaand multidisciplinair team. CE provides healthcare with a permanent multidisciplinary team Specify the multidisciplinary team Are you informed about the different roles within the team? How? When? Are you informed on: How to reach the team in acute situations?

19 Criterion 3 Het expertisecentrum is verantwoordelijk voor het realiseren van en levert inbreng bij de ontwikkeling van (patiëntenversies van) zorgstandaarden en richtlijnen en werkt mee aan de verspreiding hiervan, samen met vertegenwoordigers van betrokken patiëntenorganisaties. CE is responsible for contributing to the development of Standards of Care and guidelines, incl. patient versions. CE should contribute to the distribution of these professional standards, in collaboration with representatives of patient organisations. Is there an Standard of Care for the disease(s) you represent? Was PO involved in the development? Patient version available?

24 Criterion 7 Het expertisecentrum zorgt, waar nodig, voor waarborging van de continuïteit van de zorgverstrekking van kinderjaren, via adolescentie en gedurende volwassen leeftijd (transitiezorg) CE guarantees the continuity of care between childhood, adolescence and during adulthood. Does the CE guarantee continuity of care and if so, how? What is the quality of this transition care (performance, timing)? Are you involved in the development of quality indicators or quality assessment?

25 Criterion 8 Het expertisecentrum draagt zorg voor de opleiding van c.q. de overdracht van kennis naar (nieuwe) experts van het multidisciplinaire team CE is responsible for education and for sharing knowledge and competences with (new) experts within the multidisciplinary team. The continuity of care is guaranteed within the CE? How?

26 Criterion 9 Het expertisecentrum is bereid tot visitatie CE is willing to be audited for quality control. Can you confirm if this is the case? Would you like to participate in audits?

27 Criterion 10 Het expertisecentrum werkt met patiëntenorganisatie(s) samen om de kwaliteit van zorg te verbeteren CE collaborates with patient organisations to improve the quality of care. Are you willing to sign a Letter of Agreement? What is the frequency of contact? How does the CE include patients perspective? (questionnaires, meetings etc.)

31 Criterion 14 Het expertisecentrum verricht wetenschappelijk onderzoek op het gebied van de zeldzame aandoening en publiceert hierover CE contributes to scientific research and publishes about the outcome. Does the CE consult the PO regarding the research agenda? Have you been invited to participate in research? How does the CE communicate about the relevance of the outcomes of the research for individual patients? (via PO, meetings, website, etc.)

32 Criterion 15 Het expertisecentrum draagt zorg voor opslag van medische data en/of van lichaamsmateriaal van patiënten met de aandoening. CE is responsible for storage of medical data and tissue samples. Does the CE inform the PO on development, existence, goal of the bio bank? Does CE work together with the PO on development/ governance of the bio bank? Was the PO involved in the development of information materials / informed consent for participants?

34 Final questions for POs A. Specify the 5 most relevant criteria out of the 16 criteria that will be assessed B. Answer the SMART questions covering each of the 16 criteria, per cluster and per disease C. Final conclusion PO: Accreditation for 5 years Conditional accreditation for 1 year No accreditation D. Main strong points? Main suggestions for improvement? Accredited CE will be listed in Orphanet and can participate in call for ERNs

38 Take home messages Advocate for your rights! Combine medical and patient perspectives Develop a professional procedure with your National Alliance (or use ours) Be prepared for resistance Communication: respectful, transparent, synchronic Work towards a permanent quality system Points to consider: CEs: starting point for Expertise Networks? Lessons for accreditation of ERNs?

WORKING FOR RARE AND GENETIC DISEASES DUTCH GENETIC ALLIANCE The Dutch Policy on Rare Diseases, the Role of Centres of Expertise their Relevance for Paediatric Diseases Cor Oosterwijk PhD NIA Symposium

1 Intercultural Mediation through the Internet Hans Verrept Intercultural mediation and policy support unit 2 Structure of the presentation - What is intercultural mediation through the internet? - Why

www.iuscommune.eu Dear Ius Commune PhD researchers, You are kindly invited to attend the Ius Commune Amsterdam Masterclass for PhD researchers, which will take place on Thursday 16 June 2016. During this

First part of the Inburgering examination - the KNS-test Of course, the questions in this exam you will hear in Dutch and you have to answer in Dutch. Solutions and English version on last page 1. In welk

Dutch Research Council: women in scientific careers Dr. Wilma van Donselaar Paris 2005 What is NWO? NWO is the Dutch Research Council and consists of 8 councils: Humanities, Social Sciences, Medical Sciences,

Outcome monitoring Empowerment of clients and their local and national representatives Chris Nas Senior policy advisor cnas@ggznederland.nl WHO Collaborating Centre for Research and Training Lille, January

Travel Survey Questionnaires Prot of Rotterdam and TU Delft, 16 June, 2009 Introduction To improve the accessibility to the Rotterdam Port and the efficiency of the public transport systems at the Rotterdam

Introduction Henk Schwietert Evalan develops, markets and sells services that use remote monitoring and telemetry solutions. Our Company Evalan develops hard- and software to support these services: mobile

Healthy people want everything, sick people want only one thing. would love to see a Hospital Teacher Consultant Education Sick Pupils Educational Service Centre University Medical Centre The Netherlands

University of Groningen Structured diabetes care in general practice Fokkens, Sudara Andrea IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from

CREATING VALUE THROUGH AN INNOVATIVE HRM DESIGN CONFERENCE 20 NOVEMBER 2012 DE ORGANISATIE VAN DE HRM AFDELING IN WOELIGE TIJDEN Mieke Audenaert 2010-2011 1 HISTORY The HRM department or manager was born

Optional client logo (Smaller than Deloitte logo) State of the State Den Haag 28 maart 2017 State of the State - Presentatie Taxlab 1 plancapaciteit hebben dan de veronderstelde huishoudensgroei. State

Expert at a distance Creating a marketplace where expertise is made available through videoconferencing Roland Staring Community Support Manager roland.staring@surfnet.nl Working together for education

Dutch survival kit This Dutch survival kit contains phrases that can be helpful when living and working in the Netherlands. There is an overview of useful sentences and phrases in Dutch with an English

it would be too restrictive to limit the notion to an "inner circle" in which the individual may live his own personal life as he chooses and to exclude therefrom entirely the outside world not encompassed

State Examinations Commission Marking schemes published by the State Examinations Commission are not intended to be standalone documents. They are an essential resource for examiners who receive training

Settings for the C100BRS4 MAC Address Spoofing with cable Internet. General: Please use the latest firmware for the router. The firmware is available on http://www.conceptronic.net! Use Firmware version

Vragenlijst in te vullen en op te sturen voor de meeloopochtend, KABK afdeling fotografie Questionnaire to be filled in and send in before the introduction morning, KABK department of Photography Stuur

De samenwerking tussen verzekeringsartsen en arbeidsdeskundigen binnen de Wajong teams betreffende ASS Engbers, C. IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if

Work to Work mediation Mobility Centre Automotive Theo Keulen 19-9-2008 Policy Context Flexibility,mobility and sustainable employability are key words in modern labour market policy Work to work arrangements

SURFnet User Survey 2006 Walter van Dijk Madrid, 21 September 2006 Agenda A few facts General picture resulting from the survey Consequences for the service portfolio Consequences for the yearly innovation

University of Groningen Pieces of the Puzzle Vissia, Eline Margreta IMPORTANT NOTE: You are advised to consult the publisher's version (publisher's PDF) if you wish to cite from it. Please check the document